Chapter 53: Hospice Care and End-of-Life Issues

Charles F. von Gunten; David E. Weissman

HOSPICE CARE

Hospice Care

The number one complaint about hospice care from patients and families is that no one told them about it sooner. Referral for hospice care is appropriate when the most important goal is comfort rather than making the cancer better. If patients improve or resume anticancer therapy, they can be discharged (graduate) and resume services later without penalty

Eligibility: Prognosis of less than 6 months if a patient's disease runs its usual course. Individual patients can continue to be eligible if they live longer than 6 months as long as their physician believes death is more likely than not within 6 months. A patient does not need a DNR order. There is no limit to the number of days a patient can receive hospice care. There is no penalty if a physician is wrong about a patient's longevity

Prognosis: Oncologists overestimate prognosis when compared with actual survival. Referral for hospice care is associated with an increase in survival as compared with controls

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General Indicators of Poor Prognosis

Specific Indicators of Poor Prognosis

Performance status:

Karnofsky 10 or 20 (ECOG/Zubrod 4): <1 month

Karnofsky 30 or 40: 1–2 months

Karnofsky 50 (or ECOG/Zubrod 3): 2–3 months

Hypercalcemia: 6 weeks

Multiple brain metastases: 3–6 months

Anorexia: <2 months

Delirium/confusion: <1 month

Dyspnea: <1 month

Nutritional status:

Serum albumin <2.5 mg/dL: <6 months

Specific cancers:

Stage IV non–small cell lung cancer: 6–12 months

Unresectable pancreas cancer: 4–7 months

Stage IV esophagus cancer: 3–6 months

Stage IV gastric cancer: 7 months

Discussing Hospice Care

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Discussing Hospice Care

One of the biggest barriers to timely referral for hospice care is physician discomfort with the discussion

Clinical pearl: Discuss hospice care after determining broad goals of care (if focus of care is comfort, to be as independent and comfortable as possible, hospice helps achieve the goals)

Steps

Suggested Phrases

1. Establish the setting: privacy, time

“I'd like to talk with you about our overall goals for your care”

2. What does the patient understand? Get the patient talking

“What do you understand about your current health situation?” or

“What have the doctors told you about your cancer?”

3. What does the patient expect? Correct misperceptions

“What do you expect in the future?” or

“What goals do you have for the time you have left—what is important to you?”

4. Discuss hospice care

“You've told me you want to be as independent and comfortable as possible. Hospice care is the best way I know to help you achieve those goals.” Never say, “There's nothing more we can do”

5. Respond to emotions

Be quiet. The most profound initial response a physician can make is silence, providing a reassuring touch, and offering facial tissues. The most frequent mistake is to talk too much

6. Establish a plan

“I'll ask the hospice to come by to give information, then you and I can discuss it”

Discussing DNR (Do Not Resuscitate) Orders

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Discussing DNR (Do Not Resuscitate) Orders

Discuss DNR orders after discussions of overall goals of care, following a stepwise approach

Steps

Suggested Phrases

1. Establish the setting: privacy, time

“I'd like to talk with you about our overall goals for your care”

2. What does the patient understand? Get the patient talking

“What do you understand about your current health situation?” or

“What have the doctors told you about your cancer?”

3. What does the patient expect? Correct misperceptions. An informed decision about DNR status is only possible if patients have a clear understanding of their illness and prognosis

“What do you expect in the future?” or

“What goals do you have for the time you have left—what is important to you?

“Do you ever think about dying?”

“How do you want it to be?”

4. Discuss DNR Order Clinical pearl: Start general and become specific later in the conversation

Never say, “Do you want us to do everything?”

“You have said you want to be comfortable when you die and you hope you'll just slip away in your sleep. Therefore, I recommend that I write a 'DNR' order which means that we won't try artificial or heroic means to keep you alive when that time comes”

5. Respond to emotions

Be quiet. The most profound initial response a physician can make is silence, providing a reassuring touch, and offering facial tissues. The most frequent mistake is to talk too much

6. Establish a plan. A DNR order does not address any aspect of care other than preventing the use of CPR

“We will continue maximal medical therapy”

When the Patient Will Not Be DNR

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When the Patient Will Not Be DNR

The seemingly unreasonable persistent request for CPR typically stems from one of several themes:

Steps

Suggested Phrases

1. Inaccurate information about CPR For patients with advanced cancer, who undergo CPR in the hospital, the survival to discharge is zero

“What do you know about CPR?”

2. Hopes, fears, and guilt Some need an explicit recommendation or permission to stop all efforts to prolong life, that death is coming and that they no longer have to continue “fighting”

“What do you expect to happen? What do you think would be done differently, after the resuscitation, that wasn't being done before?”

3. Distrust of the medical care system

“What you said makes me wonder if you may not trust the doctors and nurses to do what is best for you—will you tell me about your concerns?”

If patients are not ready for a DNR order, don't let it distract you from other important end-of-life care needs; emphasize the goals that you are trying to achieve; save a repeat discussion for a future time; good care, relationship building, and time will help resolve most conflicts

Managing Persistent Requests for CPR

Decide if you believe that CPR represents a futile medical treatment—that is, if CPR cannot be expected to either restore cardiopulmonary function or to achieve the expressed goals of the patient. Physicians are not legally or ethically obligated to participate in a futile medical treatment. Some facilities have a policy that a physician may enter a DNR order in the chart against patient wishes. Your options at this time include:

Transfer care to another physician chosen by the patient/family
Plan to perform CPR at the time of death—but don't end the discussion. Tell them that you need guidance if the patient survives because it is very likely the patient will be on life support in the ICU, and the patient may not be able to make decisions for themself; ask the patient (or the family) to help you determine guidelines for deciding whether to continue life-support measures. If not already done, clarify if there is a legal surrogate decision maker

Normal Dying

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Normal Dying

Weakness/fatigue

Give permission to patient, family, and other caregivers to accept weakness/fatigue. This does not represent loss of will, the patient is dying

Decreasing appetite/food intake, wasting

Loss of appetite and weight loss are normal at the end of life. Parenteral or enteral feeding neither improves symptom control nor lengthens life: The patient is dying of cancer—it is the cancer that is making the patient thin

Decreasing fluid intake, dehydration

Blood pressure or weak pulse is normal. Peripheral edema or ascites means excess body water and salt. Low oncotic pressure means parenteral fluids cause peripheral or pulmonary edema, worsened breathlessness, cough, and orotracheobronchial secretions

Decreasing blood perfusion, renal failure

Tachycardia, hypotension, peripheral cooling, peripheral and central cyanosis, and mottling of the skin (livedo reticularis) are normal. Venous blood may pool along dependent skin surfaces. Urine output falls as perfusion of the kidneys diminishes. Oliguria or anuria is normal. Parenteral fluids will not reverse this circulatory shutdown: The body is shutting down

Neurologic dysfunction: 2 patterns

Brain failure—the “usual road” with decreased level of consciousness that leads to coma and death. The “difficult road” that a few patients follow presents as an agitated delirium caused by central nervous system (CNS) excitation, with or without myoclonic jerks that leads to coma and death

Pain

There is no evidence that there is a crescendo of pain near death. Terminal delirium frequently is misdiagnosed as pain

Changes in respiration

Diminished tidal volume. Periods of apnea and/or Cheyne-Stokes pattern respirations are normal. Accessory respiratory muscle use may become prominent

Loss of ability to swallow

Gurgling, crackling, or rattling sounds with each breath may be heard. Some have called this the “death rattle.” For unprepared families and professional caregivers, it may sound like the patient is choking

Loss of ability to close eyes

Wasting leads to loss of the retroorbital fat pad, and the orbit falls posteriorly within the orbital socket. Eyelids are of insufficient length

Loss of sphincter control

Urinary and fecal incontinence are frequent. A marked increase in need for direct care giving is required to keep patient clean

END-OF-LIFE ISSUES

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Medications at the End of Life

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Medications at the End of Life

Limit medications to those needed to manage symptoms, such as pain, breathlessness, excess secretions, terminal delirium, and seizures and their prevention. Choose the least-invasive route of administration: the buccal mucosa or oral routes first, the subcutaneous or intravenous routes only if necessary, and the intramuscular route almost never

Indication

Drug

Utilization^✫

Terminal Delirium

Lorazepam

1–2 mg orally or sublingually every 1 hour until settled

Midazolam

1–2 mg subcutaneously or intravenously every 15 min until settled

Haloperidol

1–5 mg (haloperidol lactate) orally or subcutaneously every 1 hour until settled

Caution: Haloperidol decanoate is formulated in sesame seed oil, and is administered only by intramuscular injection

Chlorpromazine

10–25 mg orally, per rectum (suppository), or intravenously every 2–6 hours

Seizures

Any benzodiazepine

Lorazepam 2–5 mg orally, sublingually, subcutaneously, or intravenously every 1 hour, or

Midazolam 2–4 mg by subcutaneous or intravenous injection every 15 minutes

Fosphenytoin

10–20 mg PE/kg body weight intravenously at a maximum rate of 150 mg PE/min

Note: 1.5 mg Fosphenytoin sodium is equivalent to 1 mg phenytoin sodium, and is referred to as “1 mg PE (phenytoin equivalents)”

Maintenance dosage, initially:

4–6 mg PE/kg per day with fosphenytoin sodium (intravenously) or phenytoin sodium (orally)

Phenobarbital

60–120 mg by intravenous or intramuscular injection, or per rectum (suppository) every 20 minutes until settled

Rattle

Scopolamine

0.2–0.4 mg subcutaneously every 4 hours, or

0.1–1 mg/hour, by continuous intravenous or subcutaneous infusion, or

one to three 1.5-mg transdermal patches, apply to intact skin every 72 hours

Glycopyrrolate

0.2 mg subcutaneously, intravenously, or intramuscularly every 4–6 hours, or

0.4–1.2 mg/day by continuous intravenous or subcutaneous infusion

Bowel obstruction

Octreotide

50 mcg subcutaneously every 12 hours, or

10 mcg/hour, by continuous intravenous or subcutaneous infusion and titrate to response

Note: Range of doses in anecdotal reports is 50–220 mg twice daily

Caution: Octreotide acetate solution is appropriate for subcutaneous or intravenous administration. Octreotide acetate suspension is administered only by intramuscular injection

Breathlessness

Morphine

Opioid-naïve patients:

5–10 mg orally every 1 hour, or

1–2 mg subcutaneously every 20 minutes, or

1–2 mg intravenously every 15 minutes

Opioid-tolerant patients:

Increase analgesic dose by 50%

^✫Some of the products identified or formulations appropriate for a particular route of administration may not be available worldwide

Care at the Time of Death

Answer questions and review the signs and potential events that can be expected. For many families and caregivers, knowing ahead of time decreases anxiety. Most people do not know much about death

Signs of death discussed with family:

The heart stops beating; breathing stops; pupils become fixed; body color becomes pale and waxen as blood settles; body temperature drops; muscles and sphincters relax, urine and stool may be released; eyes may remain open; the jaw can fall open; the trickling of fluids internally may be heard

After expected death occurs:

Go to the bedside to comfort family members who are distressed and appreciate that the doctor shows “he or she cared.” This need not take more than 5–10 minutes

Participate with nursing to create a visually peaceful and accessible environment. A few moments spent alone in the room positioning the patient's body, disconnecting any lines and machinery, removing catheters, and cleaning up any mess will allow the family closer access to the patient's body. If eyes remain open, eyelids can be manually held closed for a few minutes and will usually remain closed once they dry. If they remain open, a small amount of surgical tape or a short Steri-Strip will hold them closed for longer without pulling on eyelashes when they are removed. If the jaw falls open as muscles relax, a rolled-up towel placed under the chin with the head elevated on pillows will usually hold the jaw closed until muscles stiffen some 4–6 hours later

The doctor may need to tell the “bad news” of a patient's death to someone who didn't have previous warning. Follow the guidelines for communicating bad news. Avoid breaking unexpected news by telephone, as communicating in person provides much greater opportunity for assessment and support. Tell them what to expect before they see the body (eg, changes in body color, temperature, and the scene they will see)

Writing a Condolence Note

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Writing a Condolence Note

A note or letter from the doctor after the death has been widely reported to be helpful to the bereaved. Such a note has 2 goals: to offer tribute to the deceased as someone who was important, and to be a source of comfort to the survivors. It should be handwritten and sent promptly, generally within 2 weeks after the death. Use any standard stationery

Steps

Suggested Phrases

Acknowledge the loss and name the deceased

“The hospice called to let me know that your mother, Mary Smith, died on Thursday”

Express your sympathy

“I was so sad to hear the news”

Note special qualities of the deceased

“I will miss her sense of humor”

Recall a memory about the deceased

“I particularly remember when she had all of us in the office laughing at one of her jokes about the examination gown”

Name personal strengths of the bereaved

“I was impressed by the devotion you and your family showed your mother during her illness. I remember when she commented on it herself”

Offer help, but be specific. Don't say, “If there is anything I can do, please call”

“I'd be happy to answer any questions you or your family might have about her illness and her care. Just make an appointment with the office—no charge”

End with a word or phrase of sympathy

“I'll never forget your mother or the care you gave her”

Telephone Notification

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Telephone Notification

There will be cases where the people who need to know about the death are not present. In some of these cases, you may choose to tell someone by phone that the patient's condition has “changed,” and wait for them to come to the bedside in order to tell them the news. Factors to consider in weighing this include family member advice, whether death was expected, the anticipated emotional reaction, if the person is alone, if the person is able to understand, distance, availability of transportation, and time of day. Inevitably, there are times when notification of death by telephone is unavoidable. If this is anticipated, prepare for it. Determine who should be called and in what fashion. Some families will prefer not to be awakened at night if there is an expected death

Steps

Suggested Phrases

1. Get the setting right

Ask to speak to the person closest to the patient

2. Ask what the person understands

“What have the doctors told you about M's condition?”

3. Provide a “warning shot”

“I'm afraid I have some bad news”

4. Tell the news

“I'm sorry to have to give you this news, but M just died”

5. Respond to emotions

Active listening is best initial approach. “I can hear how sad you are”

6. Conclude with a plan

If the family chooses to come to see the body, arrange to meet them personally

REFERENCES

Listen

Buckman R. How to Break Bad News: a Guide for Health Care Professionals. Baltimore, MD: The Johns Hopkins University Press; 1992:65–97

Diem SJ et al. Cardiopulmonary resuscitation on television. Miracles and misinformation. N Engl J Med 1996;334:1578–1582 [PubMed: 8628340]

Emanuel LL, von Gunten CF, Ferris FD (eds). The EPEC Curriculum. 1999. The EPEC Project, www.epec.net

Fast Facts and Concepts. End of Life/Palliative Education Resource Center, Medical College of Wisconsin. Available at: www.eperc.mcw.edu/EPERC/FastFactsandConcepts. Last accessed, August 1, 2013

Medical futility in end-of-life care, Report of the Council on Ethical and Judicial Affairs (American Medical Association). JAMA 1999;281:937–941 [PubMed: 10078492]

Warm E. Improving EOL care—internal medicine curriculum project. J Palliat Med 1999;2:339–340

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Chapter 53: Hospice Care and End-of-Life Issues

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HOSPICE CARE

END-OF-LIFE ISSUES

REFERENCES

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